Tag: EDS

Weekly update: “I had a cunning plan…”

“I’ve got a plan so cunning you could put a tail on it and call it a weasel….” (Blackadder, in Blackadder Series 3, written by Richard Curtis and Ben Elton)

As ever, I had great plans for getting my revamped blog up and running, but things did not go accordingly. The week before last I was knocked flat by very painful endometriosis symptoms. Then last week was extremely busy with two wonderful occasions celebrating my goddaughter and godson’s First Holy Communions.

rosary

The travel involved meant that my chronic pain flared badly, though I am absolutely delighted and thankful we could go and celebrate with them. Their families have become dear friends. I realised I have known my goddaughter’s mum for 17 years. That’s incredible. Looking back it’s quite scary how the time has passed. I’m deeply thankful for her friendship and how she has made my husband and I part of her family, through so many ups and downs and so many times that I have not been able to be the friend I’d want to be and have not been easy to be around.

Here is some baking I did last week for tea with my godson’s family. It’s the first time I have baked since Christmas. It’s therapeutic for me as well as a good way to make a gift. These cakes and tea bread were all gluten free.

baking

Today, we got some more unexpected bad news about my husband’s health, including the fact he needs yet another surgery. A problem we had thought to be relatively minor could be or could become very serious. Coming as it does, clashing with what had been elation at his getting through his previous surgery, this is a shock for him. We are both somewhat stunned. I feel a certainty we can walk through this whatever it leads to, because we have each other, the sacrament of our marriage strengthening us, the unchanging love of God, and good and quick medical care here. I will say more in future posts but it’s another case of “thank goodness it was caught early”.

On the positive side, the doctors are still permitting us to go on our holiday to Greece next week. This will be a very important rest and please God, time of happiness, for my husband before he faces his next surgery. We are going to take things slowly in Greece and take plenty of time to appreciate the little beauties in each day. We will be by the sea for much of the time and I think that itself is healing, through God’s grace.

As you can see, this means I have not been able to do with my blog what I wanted to. I am sorry not to fulfil the schedule I had set out. I don’t want to let you down. I am going to postpone making any major changes until we come back from holiday and I can dedicate particular time each week to this blog. In the meantime I will update when I can and share some of the joy of our travels.

Ginny xxx

 

Waiting and feeling like a fraud

I had to come to hospital this afternoon for an urgent MRI scan. I’m in a room off A&E waiting for the results. The GP told me I had to come in because my back pain, numbness in my legs and incontinence have got rapidly worse than usual and he was concerned I may have nerve compression. I feel sure the scan will show nothing or at least nothing new. Waiting and waiting it’s getting worse. I feel a total fraud. I feel sure they will tell me nothing is wrong. That I’m crazy. That I’m stupid. That nothing is wrong and there’s no reason for the pain. I feel panic and sick and dizzy thinking of it. I want to go home. My mind is spiralling thinking how angry my GP will be an how my relative who has found out I’m here, who doesn’t believe I’m ill in the first place, will use this to show how “it’s all in my head”.

I feel like I’m such a fake.

I want to go home to bed.

I’m so tired of pain and tired of hospital. Everything I’m trying to do, which the pain clinic tells me is meant to help, is making the pain worse. Or it’s getting worse despite it.

My head aches and my stomach feels like something clawing it and twisting from the inside out.

Greek deliciousness and changing tastes

Continuing to share photos of our experiences in Greece, I think some of the foodstuffs are worth their own post!

The vegetables alone deserve a mention and the Greek treatment of them is totally different from the UK’s. Above is a picture of part of my lunchtime snack at the shopping mall. It’s a roast aubergine with tomato, courgette, herbs, olive oil and a little Greek cheese. (Similar and even tastier than this was vegetables “imam” style, involving aubergines slowly baked with a tomato sauce, which we had at a little restaurant by the Cathedral.) Greek meals incorporate vegetables as an interesting, focal part of the dish or course. They are bursting with flavour already from the climate but as well as this they are prepared with love, whereas in the UK we often drop them on the plate to tick the “5 a day” box and eat them as a chore to be got through to deserve the enjoyment of the meat or sweet. I think we miss something there.

On a similar line, that’s a Greek salad.

Fish and seafood is also important and I tried quite a bit. Sardines are totally different and definitely not tinned there. But much as I wanted to, as they look great and my fiancé enjoys them, I could not get my tastebuds round calamares (squid):

I think I’ll stick to photographing them 😅!

Greek breakfast usually involves hard cheeses and cold meats, and even stuffed vine leaves on occasion, as well as eggs, bacon, fruit, bread, cereals, yoghurt, nuts and so on being available at the hotel buffet.

Not forgetting sweets and desserts:

These macaroons and truffles were just a couple of the amazing selection at a sweet shop near our hotel. The sweet shops we saw also sold a huge variety of nuts – often a better variety than I’ve come across in many health food shops – as well as honey, preserves, halva and candied / dried fruits.

Finally, there are our delicious aperitifs at a rooftop bar looking out over Athens (incredible view to feature in my next post!).

Before we went, I was not sure how I would find following the diet I need to at present because of my EDS and gastric complications (no wheat, minimal gluten, minimal grains, no milk or yoghurt or soft cheese). I found it much easier than I had expected and that there were loads of available choices. I couldn’t try any of the pasta or pizza which was a shame but there was so much else to choose from. There are fewer gluten-free substitute foods on the menu, for example, I got the impression that restaurants don’t typically offer gluten free bread or pasta. However with so much else free from gluten to choose from, they aren’t missed (and they don’t feature much in my regular diet anyway). Admittedly, for someone who is celiac and has to be stricter than me, or who is completely dairy intolerant or vegan, it would be harder when dining out.

Eating felt much more enjoyable than it usually does. Everything just tasted riper and better. How much of that was objectively true and how much my “grass is greener” perception because of being on holiday, I’m not sure! Meals felt more filling more quickly. Or was it the heat?! I didn’t feel the intensity of hunger and cravings that I hate – maybe I shouldn’t but I do – and I didn’t feel out of control. I didn’t feel such a desire for sugar and have to deliberately choose to substitute it with protein, as I’ve been trying to. I just wanted other things. Back home, my regular food tastes rather lacking. On the positive side, this inspires me to learn to cook some Greek dishes once my house move is complete and we are married in the autumn.

Ginny xxx

Reforming my food intake – eating disorders v changes for healing

TRIGGER WARNING: this post discusses diet, eating disorders and food restrictions.

I was back at hospital a couple of weeks ago with another bowel pseudo obstruction, with a lot of pain and bleeding. Scary. Thanks be to God this was not as serious as the obstruction I had last year. However over the past year on the whole I have had a marked increase in gastric symptoms which are part of my POTS and Ehlers Danlos Syndrome. It’s painful and disruptive. Possibly it’s also doing the rest of my body no good if I’m having inflammation or not absorbing nutrients properly.

I’ve decided to change how I eat along the lines of what I’ve read can help people with my conditions. It will involve a lot of protein, cutting right back on wheat and sugars (this will be hard for me!) and eliminating junk food. It will be quite bland at first whilst I find out what foods work for me or not. I don’t have celiacs but people with POTS and EDS can have problems with wheat that aren’t celiacs.

I’m conflicted because any strict diet, food restriction or elimination is triggering to my eating disordered thoughts and voices. Moreover I can’t deny that I’m hoping that my change in diet will lead me to get back control of my hunger, cravings and bingeing and that I’ll lose weight. I really want to sort my stomach problems but control and losing weight are hugely strong desires too. I’m overweight and repulsed at myself.

Possibly what I’m doing isn’t what professionals would think is a good idea if you have bulimia, binge eating disorder or a history of anorexia. Usually elimination of foods isn’t advised and you are supposed to listen to your body’s cues. I have no idea how to safely listen to my body’s cues. It seems to constantly scream “hungry!” In a way, am I listening to my body by recognising my gastric issues and the fact that my current eating is doing me no good? But I’m furious with myself for the binges and constantly want to punish myself. The diet that I’m going to be following will cut out a lot of foods I binge on. Will that stop my binges being triggered? I’m hoping so but I just feel I know I’ll lose control.

I’m trying to think of the changes as a long term way of eating, making it work for me throughout my lifetime, not a fad diet; also I’m trying to remember the fact my body needs this to get better.

Ginny xxx